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Professor and Canada Research Chair in Bioethics and Philosophy
Dalhousie University, Halifax, Nova Scotia
"I actually think that the mind is very
much influenced by the body—but I’m quite willing to say, at the end of
the day, I think identity actually is not bounded by skin."
Welcome to the latest in the Mind Matters series of conversations between prominent bioethicists and WBP Scholars. The following conversation is between WBP Research Fellow and bioengineer, Emilie Clemmens, and Francoise Baylis, Ph.D., a professor and
Canada Research Chair in Bioethics and Philosophy at Dalhousie
University in Halifax, Nova Scotia.
Dr. Baylis is a renowned expert in women’s
health and bioethics including issues surrounding assisted reproduction
and stem-cell research. But more recently she has begun work in the
field of neuroethics and is especially interested in how interventions
in the brain can be perceived as impacting the human sense of self. For more information on neuroethics, please visit Dr. Baylis' research website at www.noveltechethics.ca.
 So,
Dr. Baylis, you are well known for your work on reproductive ethics
among other topics, but can you first tell us what led you to
neuroethics?
Well, my interest in neuroethics very much grows out of the work that I
was doing in reproductive ethics and so what happened is, I was
particularly interested in the debate around the ethics of embryonic
stem-cell research and obviously some of the concerns there having to
do with the developing human embryo, its moral status, whether or not
it should be used to develop therapeutic interventions for some very
debilitating diseases we typically think of: Parkinsons, Alzheimers,
spinal-cord injuries, things like that, and that work really then took
me to start looking at some of the conditions and some of the prospects
for intervention in the brain. So now I was looking at [how] we’re
approaching women who have a reproductive problem and we’re asking them
if we can have their embryos—not to develop better reproductive
intervention, but we want their reproductive tissue to address other
issues, and that for me was an interesting departure and one that I
really wanted to spend some time thinking about, so that’s what took me
very much into the realm of neuroethics.
That’s very interesting, though it’s kind of where reproductive ethics meets neuroethics.
Absolutely,
and that is still at the forefront of at least some of the issues
around embryonic stem-cell research—the reproductive issues and women’s
interests are very much still front-and-center with at least that
particular area of research in neuroethics.
What’s
happened is the woman somehow has been obscured from the debate and
that all we’re able to focus on is either the developing embryo in the
context of some reproductive issues or, in this case, the reproductive
tissue in the context of some research ethics issue, and in those
contexts I think it has taken women academics to say: "excuse me, there
is a woman at the center of this debate" and you cannot just pay
attention to her as the fetal container or as the provider of research
tissue, you really need to pay attention to her interests and where
she’s situated in this debate or dialogue. And certainly, with a lot of
the proposed embryonic stem-cell research, you keep wanting to say:
"and where do you think these eggs are coming from, and why do you
think women just want to give them to you, and is there an obligation
for them to support broad societal objectives or communal health
objectives, is there an obligation for them to be altruistic, why?" It
is about the interest, needs, perspectives, and obligations of women.
Of course, the interests of women aren’t
limited to the reproductive, and many of them might be interested in
treating Parkinsons disease or other neurological disorders.
Absolutely—and
I think that is extremely important to appreciate, and so part of the
conversation goes to try to understand what are women’s interests and
which projects do they want to support, promote, and move forward.
Okay, to bring it back to neuroethics specifically, what more can you
tell us about the field of neuroethics, who’s involved, what’s the
landscape like, and what are the goals or hopes?
Well there’s a range of different kinds of technologies that are being
developed that really are at different stages of development, not only
in terms of science but, also in terms of the ethics discourse.
So we have, for example, a range of
technologies in neuroimaging—the one that’s garnering a lot of
attention now would be fMRI—[fMRI measures oxygen levels and blood flow
to the brain and how the blood flow changes during different
situations.] A number of assumptions are made on the basis of the
pictures that one is able to generate from tracking that blood flow.
And I think what is particularly interesting there is, from the ethics
perspective, that’s the literature that really has been moved ahead in
terms of at least canvassing the issues, whether it has to do with
incidental findings—so you’ve gone into image a patient looking for
something and you find something else. Because the issue is: what is it
that you tell the patient who didn’t ask you to go looking for this
other information especially if it has huge implications for health.
What if that patient’s a child? You know, what do you do with that
information? The interesting thing about the ethics commentary,
research, writing around neuroimaging is that it’s also looking outside
the clinical context to identify a range of ethical issues.
So it’s not just what happens to the patient
or the research subject in the clinical setting, but there have been
predictions about its use in the context of the legal system, criminal
law, who would see neuroimaging in the courtroom, why people imagine
that this would be useful in terms of determining competence to stand
trial. This might be especially true for example for juveniles who
might need to stand trial as an adult. People have thought this could
be useful in terms of either establishing full or absent criminal
responsibility. And perhaps most familiar to the audience would be the
prospect of using neuroimaging for detecting lying or malingering.
There’s certainly been a fair bit written about that.
One of the areas, as I said, is
neuroimaging—there’s a range of a lot of different kinds of
technologies there, but a very interesting ethics discussion looking at
the use of this technology in the clinical setting and outside the
clinical setting. Also, of great interest are some surgical type
interventions. One example would be brain stimulation, but we could
also go back to the conversation I was having earlier around stem
cells—that would be a form of transplantation, so it’s not that you not
only have to generate the tissue, you also have to get it into the
brain in the right place.
And of course there are people doing some
interesting research that even goes beyond that in terms of what might
be described as the human-machine interface. We even have some people
writing about cyborgs—so there’s an interesting article, in fact, on
the topic of cyborgs and identity by Grant Gillett not that long ago—so
I think you’re seeing a range of different technologies where people
are looking at the brain in terms of surgical intervention which I just
mentioned, or the more familiar perhaps would be pharmacological
intervention.
Many people would be familiar with Peter Kramer’s work, Listening to Prozac,
but other kinds of issues where people are now talking about the brain
as though it’s a chemical entity as contrasted with perhaps a genetic
entity or an electrical entity. It’s that black box we’re still deeply
interested in, and different researchers come at it from different
perspectives in terms of how they imagine a successful intervention in
pursuit of either a therapeutic or other goal.
You’re comment about genetics leads me to ask you: in a recent article in The American Journal of Bioethics
you wrote that “our brains are us in ways that our genes never could
be.” First, let me ask you why you think this is true, but ,secondly,
why do you think that most of us associate who we are with our brains?
Okay. Well, I think one of the things that I want to say at the outset
is I think there’s actually important distinction between the mind and
the brain. I think it is an important way to nuance that comment, but
the comment was really meant to sort of be reflective of what I take to
be the common understanding of where the seat of the "self" is and what
it is that makes us who we are, and in part what I was trying to say is
in the last twenty years or so, with the Human Genome Project, we’ve
paid a lot of attention to our genetics, and in some sense there’s this
idea that there’s a kind of determinism in our genes that determines
who we are and what we can possibly become. And, sure, we understand
that there’s a gene-environment interaction but, we actually believe
that without the genetic component we would never have the prospect of
becoming who we are or are not, and more importantly, I would say in at
least terms of public conversation, although we say we understand it is
a gene-environment interaction, we often talk and act as though we
really are our genes—so there’s a gene for aggression, there’s the gene
for homosexuality, and we just lose sight of the complexity.
I think what we have tried to say with the
brain is that right now there is still this sort of sense that the mind
is somehow situated in the brain and if we could just map it and
understand it we would be able to locate it, and in fact I would say
sometimes that’s a real potential negative consequence with some of the
neuroimaging technology. I think we do see people over-interpreting the
data that they’re getting, and perhaps not paying sufficient attention
to again something we know is true: brain plasticity, brain
variability. And yet we’re getting these pretty pictures on the basis
of which we’re making these very strong assertions and predicting that
we can tell when people are lying. Well, people disagree about what
causes people to lie. How do we imagine we’re going to get a picture of
the brain on the basis of which I’ll authoritatively say this person is
lying? We can’t do that, in fact you know we can do much less. But I
think the point there was really to sort of say, look, in common
understanding people think there is something about who we are that’s
in the brain and I think if you were to present most people with the
fanciful scenario of the science fiction body transplant and you were
to take the head off of one body and swap it with the head of another
body and you were to ask "where’s the real person?", it would go with
tracking the head and not the body.
I don’t actually have this sort of stark
dualism between the mind and the body. I actually think that the mind
is very much influenced by the body, but I’m quite willing to say, at
the end of the day, I think identity actually is in fact not bounded by
my skin. It’s not even in my body, it’s out there, it’s between me and
the world and we’re constantly negotiating it. It’s not static, in any
way shape or form. I’m projecting a sense of self—that
sense of self is informed by my body, is informed by my thoughts, but
the rest of the world is responding to what I’m putting out there and
my view of this is that if the rest of the world doesn’t respond in a
particular way that supports the narrative, the stories that I’m
constructing about who I am and what my place is in the world, I won’t,
in fact, be able to sustain that identity. I cannot persuade you that I
am brilliant if I behave in such a way—and you respond, and the rest of
the world responds in such a way that just negates that theory about
who I am—and you can probably say that if she can maintain this robust
an identity in the face of all this contradictory feedback, maybe
there’s mental illness.
So you’re saying that actually our part of our identity is how we’re perceived by others as well?
That’s what I’m saying. I’m saying that there’s this kind of relational
identity and I am not able to close myself off from the world,
construct my identity and have that be me, independent from my
environment, my context which tells me who I am, which allows me to
sustain certain kinds of stories.
Well that’s interesting. I think it’s perhaps a little bit
controversial and perhaps difficult for many of us in the scientific
field to swallow whole.
I well understand that. I’ve got a colleague that I work with who is a
brain surgeon, who works primarily on tumors, and he thinks that the
mind is somewhere in the brain and as he goes in there to remove tumors
it’s quite possible that at the end of the surgical intervention, the
patient that he will meet or confront may have a different sense of
self and I am not trying to deny that reality, I’m just wanting to
offer up that that’s not the whole story.
Part of what will then matter is when that
person doesn’t quite see themselves in the same way or understand
themselves in the same place. It will very much matter how their
immediate family and friends respond and whether they’re able to say,
“Oh, this isn’t the real Francoise”, or “Francoise before the surgery
was so different—she was this kind, sweet person and now she’s this
assertive, aggressive person that I don’t recognize.” And I, Francoise,
might say the same thing about myself, say that I don’t recognize me,
but what if I don’t have that insight, what if I think I really am the
same person and it’s the rest of the world telling me, no, that you
have changed radically and you know I’m putting this in terms of
personality because I really want to make the point starkly that that’s
a legitimate worry for patients. Will these interventions that they
consent to change who they are? And for a lot of the stuff that we do
on [informed] consent, this is the unique area in which the very organ
I think we rely upon to give that informed choice is the organ that we
are consenting to have manipulated and/or changed.
Well you mentioned some ways that neurological interventions, in
particular surgical interventions, might have a negative affect on our
personal sense of identity, our personal sense of self. What about some
positive ways in which the developments in neuroscience might help us
understand who we are or develop a more profound sense of self?
One of the interesting things here is the question you’re asking just
really makes transparent how much of what we value is a function of our
environment.
So what do I mean by that? Let’s take
chemical intervention such as psycho-pharmacology because I think it’s
an easier kind of example. We’re already using pharmaceuticals to help
people with concentration, to help people with memory, to help people
who are sleep-deprived and now there’s talk about using Proprananol for
post-traumatic stress disorder, and you think about those kinds of
things and it’s positive in the sense that we’re hoping to attend to
ways of being in the world which individual people experience as
dysfunctional for themselves. And I think that the interesting thing
there is that you then have others who are worrying about, well, that’s
deeply problematic if you know I can’t know the difference between the
real Francoise and the Francoise on drugs. And I think that there’s
this sense that somehow we’re losing the ability then to identify who
is the authentic being.
Now there are others who would completely
discredit that way of talking—that there is no authentic self there,
that the self is always a construction and the authentic person is the
person before you, whether they’re on drugs or not. What’s also
interesting is that in the wake of the genetics concerns that have been
raised, for which there is a historical precedent, most people have
named that the real issue will not be the abuse of genetic technology
by the state or by a political leader but that rather what we’ll see is
willing uptake by the masses. And I think we are starting to see that
more people think about this as an improvement. I would want to improve
my genes if I could do that, then I would become a more productive
person or a more creative person or a more whatever. And I’m not a
hundred percent sure that we would have that kind of perspective with
respect to interventions in the brain even if it were the case where
people said "I just want to be smarter such that I can help humanity."
There would be a different kind of intuitive response to whether or not
one imagines that happening solely as individual choice or whether this
is an area in which we ought to still fear state intervention.
A very simple example—we talked about
neuroimaging earlier. People imagine that technology being used by the
state in the name of national security.
Exactly. That gets back to our conversation about our belief that our
brains are ourselves and we are perhaps more squeamish about, or more
fearful of, interventions in the brain than we are of a pharmacological
intervention or gene therapy intervention—something that affects the
rest of our body as well.
Perhaps. And the other thing that we haven’t touched upo, and I think
is really important here, is that the brain is associated with
consciousness and is associated with rational thought, etc. And it’s
these types of traits that we have used historically to establish our
moral standings. And I think this is not inconsequential that the risks
in terms of brain manipulations could be quite far-reaching if we
imagine that those kinds of manipulations have the potential ability to
move us in or out of the moral community. That’s pretty striking.
I guess it’s kind of a catch-22 in a way because we’re building up,
we’ve built up a vast body of human research study ethics and then once
we start to manipulate the brain does that entire structure fall or
become affected or weaken in some way?
Well, certainly questions of that kind were at the center of an article
I wrote with a colleague of mine, Jason Scott Robert, where we were
looking at embryonic stem cell research, specifically in the context of
making chimeras. And what we were particularly interested in was taking
human embryonic stem cells and putting them into either non-human
primate embryos or fetuses or even mature animals. And I think one of
the things we were asking important questions about is what does it
mean to create a chimera in that kind of context that is both part
human and non-human primate and imagine that it could have such an
impact that we would have at least call into question the moral status
of that new creature. Beforehand, you thought you had a lab animal, an
animal that has and could legitimately be used in the context of
research, and part way through the research project, because of your
interventions, it’s now no longer clear that it has the moral standing
it had before, because perhaps you have conferred upon this creature
those very traits that we typically use in order to grant ourselves
certain rights which would not allow us to be taken and simply used as
research subjects.
And
it is important, of course, to point out that scientists are interested
in creating human-animal chimeras not just because they want to see
what happens but, because there are important medical advances that may
come from testing stem cells, and of course, for ethical reasons, we do
animal testing before we do human testing.
Absolutely—but to me, that’s an area where bioethics can make a very
interesting and important contribution by asking provocative questions.
So, first of all, you’re absolutely right. Scientists are not just
trying to do this just for the fun of it: can we see what kind of
monster we could create. That’s really not what’s happening at all.
These are very responsible scientists that have the goal to make model
systems in which they’ll be able to develop and test certain kinds of
therapeutic options, or alternatively, they’re looking at taking stem
cells that they have derived and they’d like to eventually transplant
into a human but, before they do that, they want to test it in an
animal to make sure, for example, that it’s not going to make a tumor
or that it’s going to go where it needs to go and become the kind of
cell that it needs to become. And I think that we could easily put this
in the context of responsible science. We can easily put this in the
context of existing norms. That’s how we do all kinds of research.
Well the interesting thing for me is to call
into question: that may be the way we’ve done things, but is that the
right way to be doing things? Now you know, in a sense, that is going
to sound controversial: what do you mean, we’ve had this approach for
some fifty sixty years, it’s well established, before you go into the
human you would do these preclinical trials in a range of animal models
in order to know what to expect in the human setting. Well what I find
fascinating is that we’ve assumed, I will argue, that it’s unethical
and I’ll say back to you: why is it unethical to do it in a human?
We’ve said for example in my country, really clearly in Canada, but in
a number of countries around the world, we’ve said you can do research
in the human embryo up until fourteen days. So I want to say, what’s
wrong with taking stem cells that are of human origin and putting them
into a human embryo to ask the very same legitimate scientific
questions: will these stem cells cause a tumor, will these stem cells
proliferate, will these stem cells develop in the way that I anticipate
or want? And I’m going to say back to you: you know what, I’d be much
happier with the answers to those questions if you took human stem
cells and put them into a human embryo instead of taking human stem
cells and putting them into a non-human primate embryo and then trying
after the fact to extrapolate back to the human. Why would you want to
do that? You’re introducing a problem in terms of an inferential gap,
which you don’t actually need to do.
Just to argue on a scientific level, the embryo studies will most
likely not be enough. We can’t really assess tumor formation
necessarily unless it was perhaps in an adult panel.
Sure. And that’s a very sound concern and I would just have another
scenario to present and the concern there I would raise is we actually
have a lot of evidence from other research that in fact we can’t always
extrapolate from the non-human model to the human model.
Certainly. And that’s always a concern for any type of scientific research study.
But let me add one more thing which really is an insight by a colleague
of mine but, which I am in complete agreement with and that’s where
they’re asking the question: what does the animal model model? So let’s
go back to stem cells for Parkinsons or gene transfer for Parkinsons.
Most of the animal models right now being
used to study Parkinsons—which are either rodents or non-human
primates—what they model is the tremors. They’re not modeling the loss
of mental acuity. You’re able to make a rat that has those kinds of
tremors, you’re able to make a non-human primate by giving them MPTP
have that kind of overnight Parkinsonian effect and you’re able to work
with that. So what happens, or what is at risk of happening, is that we
just might lose sight of that which is really of keen interest to the
patients inflicted with that condition.
Now please understand it is much more
complicated than that but, it does, I think, raise an important
question: how does the science that we do shape how we understand the
question that we are trying to answer?
I’d like to switch subjects, just for a moment, to get back to
women—since we are the Womens Bioethics Project— and talk about the
ways that science and neuroscience can affect women and the roles that
women can play in shaping ethics. So, we did mention women a little bit
earlier with respect to reproductive technologies but, there are other
ways that women can be especially uniquely affected by neuroscience.
For example, it’s been shown that women are more prone to certain
psychological illnesses such as depression. So, would we benefit from
gender specific studies of the human brain?
. I do think that this is the context in which some of the critiques of
feminists around research, research ethics, research agenda—where
really the norm has always been sort of the middle-aged white male—come
to the forefront in this context, and I think one of the things that
would be fascinating to look for is are we seeing that kind of gender
bias in the context of inclusion/exclusion criteria for participation
in research? Who are the research subjects in these various kinds of
interventions?
You might think, depending on what you’re
studying, that you would actually see a bias towards [inclusion of]
women if you’re thinking about dementias, for example, that have a
later onset. Women who right now have a longer life span, would
we see that kind of statistical difference reflected in the research
population? I don’t know. But I think those are the kinds of questions
I’d be interested in looking at really carefully to see if the work
that feminists have done around, for example, the issue of research
participation have had a genuine impact such that women are not being
denied the potential benefits of research.
I think it’s still very much an ongoing issue—the inclusion of women in
research studies—and it does seem to center around reproductive
capacity, as you well know, and the particular inclusion of pregnant
women of reproductive age—
And that’s going to be a fascinating thing to look for because that’s
what we would refer to as one of those boiler plate kind of statements
where automatically, no matter what the intervention is, we’re going to
exclude women of reproductive capacity.
I sit on research ethics boards which would
be the Canadian equivalent of IRBs, and I can tell you that there are
studies on knee surgery where we excluded women of reproductive age and
you want to say: what, they don’t have knees? I mean it sounds somewhat
facetious but, the response that you’ll get back is that it is going to
be a confounding factor or it will just contaminate the data, and you
want to say: excuse me, fifty percent of the population is us—how can
we be of a confounding factor?
But let me just name one other thing which
is kind of tangential but, it’s something that I am deeply committed to
wanting to mention—perhaps one
of the things that we need to pay particular attention to, if we’re
looking at dementia and perhaps some other kinds of trauma to the
brain—we need to think about the role of women as caregivers.
And I think that’s an ethical issue, and one
of the things that is striking to me—and I’m guilty of it too, so this
not about pointing the finger—but it’s just so much easier to look at
the sort of sexy, trendy things that are happening in terms of
neuro-intervention.
I’m doing a lot of work writing about stem
cells of the brain. You know, it’s cutting edge science, it’s exciting
and there’s all kinds of unknowns, etc. but, if you were talking about
neuroethics—if you’re talking about things that matter to
patients—you’re actually looking at some pretty mundane things like
dementia. And then if you start to look at the reality, you want to
look at issues of quality of life, you want to look at the facilities
that are or are not available to people with those kinds of conditions,
you want to look at what are the support systems available to those who
are expected to have caregivers—those are HUGE ethical issues. I just
worry that it’s easier for us to pay attention to something like deep
brain stimulation or fMRI or, like I said, stem cells for the brain.
I
think we’ll end with that, but I can’t tell you how glad I am that you
did bring it up because, as a woman and a mom, it’s something that I
know in my everyday life affects the people that surround me, my
friends, my family. It’s something that we’re all concerned about and
that really does get lost often in the conversation about the sexy
technology such as stem cell and cranial stimulation and things like
that, so I heartily thank you for bringing that up.
The last thing that I would ask you, though,
is what advice do you have for us, for the Women’s Bioethics Project,
as we work to engage policy makers and everyday women on the issues
surrounding neuroscience and neuroethics.
Well
I think it’s really important to always pay attention to the big
picture. And I think if you’re looking at the big picture you don’t see
patients or conditions or intervention in isolation, but you really try
to pay attention to the context in which certain kinds of interventions
get developed for certain kinds of patient populations, do or do not
get researched, do or do not get funded. What are all the synergies
that make that happen?
I also think that it’s really important to
pay attention to different practices and different policies as they
develop, with a particular eye on whether or not we’re seeing those
disproportionately impact certain segments of society, and I guess I
think that’s particularly true perhaps around issues of mental illness.
This is not gender per se, but I think we have certain kinds of
assumptions about who does and does not have which kinds of mental
illness, whether it’s the kind that warrants being treated with an SSRI
or whether it’s the kind that lands you living on the street. And I
think we need to really pay attention to that, and I think if we can do
that, that will certainly bring us back to my last comment which is
that it’s that kind of perspective which would not allow us to lose
sight, for example, of the role of women as caregivers to persons with
Alzheimer’s. That would be the kind of concrete thing that we would see
if we were constantly paying attention to the context and paying
attention to the disproportionate impact of certain practices and
policies on members of our community.
Excellent advice, and Dr. Baylis thank you so much for speaking with me
today. It’s been a true pleasure and I have learned a lot.
Well great. Thank you very much for having me.
Interview conducted May 2007 via telephone.
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